An invisible illness
My life changed overnight
Time to get up – it was August 2015, and I had a busy day ahead as a family service worker. Plus I was a mum to daughter Bell, then 10, so I was always on the go.
But, as I tried to move my left leg to get out of bed, it wouldn’t budge. It was as if my leg was ignoring what my brain was telling it to do.
I felt tired, weak, put it down to a bad night’s sleep and, after a few minutes, I dragged myself up. By the time I dropped Bell at school, I felt a bit better.
But, at the bus stop on the way into work, my leg suddenly felt heavy again.
My vision blurred and I lost balance. Grabbing hold of a lamppost, I managed to steady myself.
About 10 minutes later, I felt fine. But the next day, it happened again.
My leg felt heavy, tingly and painful, my vision blurred.
By now I was worried. Something was obviously wrong, but I put off going to the doctor, kept trying to convince myself it was fine.
Two weeks and another funny episode later, I gave in and spoke to my GP.
While I was there, my leg went into spasm and my eyes started shaking.
‘I think you may have had a mini stroke,’ the doctor said.
A stroke? I was only 37 – fit, healthy, didn’t smoke…
My GP referred me to a neurologist at London’s St Thomas’ Hospital for tests and a MRI scan. In the weeks while
I waited for results, my symptoms stopped.
‘I feel fine now,’ I told Bell, bemused.
My results showed no signs of a stroke, but revealed damage to the optic nerves in my eyes. Doctors had no idea what’d caused it.
Feeling OK, I put it from my mind. Months passed and life went on as usual.
Then, last August, I was at home when my legs went tingly, I lost my balance, my vision blurred. It was exactly a year to the day since my first spell.
Worried, I saw my neurologist for more tests. And this time, I got answers…
‘We think you have relapsing-remitting multiple sclerosis (RRMS),’ he said.
It’s a disease that affects the central nervous and immune systems. And it can cause vision problems, spasms, stiffness and balance problems. I seemed to tick every box. ‘RRMS is when people have a flare-up, followed by a period of recovery,’ the neurologist said.
It explained why I’d suffered symptoms the year before, only to feel fine afterwards.
I was told there’s no cure and nobody knows the cause. I was prescribed medication called Medrone to help ease the symptoms.
Back home, I battled through the random, painful leg spasms. The condition left me without the energy to even get out of bed. But, two weeks on, I felt like myself again.
Then, this August, the same thing happened. Blurred vision, leg spasms, losing my balance again…
‘It happens like clockwork,’ I explained to my doctors.
They’re baffled that my flare-ups occur at exactly the same time every year.
They can’t be sure if my RRMS will progress to full-blown MS. The thought of battling symptoms daily terrifies me but Bell, now 12, is so supportive.
‘Whatever happens, I’ll look after you, Mummy,’ she says.
Living with an invisible illness is tough, but I have to stay positive for her sake.
For now, I’m just taking it one day at a time.
I lost balance, grabbed hold of a lamppost The flareups occur at exactly the same time every year